Wednesday 8 May 2002 21.51 EDT
First published on Wednesday 8 May 2002 21.51 EDT

Karen Smith was 40 when sex with her partner first became uncomfortable. On examination, she discovered a lump the size of a large marble on the right wall of her vagina, just by the entrance. Fifteen years ago, she had a Bartholin cyst removed from exactly the same spot. She assumed it had now returned. Not in the least bit troubled, she ignored it.

After 10 weeks, the lump became infected, with a creamy yellow discharge. Slightly concerned, Karen finally consulted her GP, who agreed with her diagnosis of a Bartholin cyst. When two courses of antibiotics failed, she was put on the waiting list at Southend general hospital.

"Neither I nor the doctor had any sense of urgency. It never occurred to me that the lump might be life-threatening," says Karen, of Hockley, Essex. A month later, it had doubled in size. Walking was difficult, standing was painful, while sitting was virtually impossible. In agony, she went to accident and emergency. Again, she was diagnosed with a Bartholin cyst. In a brief operation the following day, the cyst was drained.

Karen returned home, relieved. Four days later, she was bleeding. She went back to the hospital. She remembers: "The doctor saw me and explained that I hadn't had a cyst after all. I had a massive, aggressive tumour within my vagina. At the time of my first operation, the histology hadn't yet come back. Now it had and the diagnosis was vulval cancer - cancer of the vagina. I'd never even heard of it before. I didn't know women could get it and I was devastated. The shock was unbelievable."

Vulval cancer is one of the rarest forms of cancer. In Britain, around 1,000 cases are diagnosed a year. The majority occur in women in their 70s or 80s. Less than 15% of all vulval cancers occur among women of 40 or under. A type of skin cancer - as it occurs on the skin of the vagina - the tumours are generally slow-growing. In Karen's case, the tumour was 5cm and deep rooted.

Karen becomes passionate when she remembers what happened after her initial diagnosis: "The doctor told me that a huge portion of my vagina would be removed during the operation. Then a flap would be inserted. I was horrified. I told the doctor that I would rather die than be deformed. I said I didn't want the operation if it meant that my clitoris was removed or my vagina disfigured in any way. I was adamant that I wanted to remain a woman. I didn't want to be an 'it'. It wasn't about sex. To me, not having a vagina would have meant that I was no longer Karen."

Determined to have the operation and subsequent reconstruction on her own terms, and aware that the NHS offered post-surgery reconstruction, Karen set about finding the right gynaecological surgeon and plastic surgeon. After extensive research, she selected Raj Varma, a consultant gynaecologist, to remove the tumour, and consultant plastic and reconstructive and burn surgeon, Mark Gittos, to reconstruct her vagina.

Before the operation, she broke the news to her three children, Stacy, 20, Christopher, 19, and Natasha, 17. She particularly dreaded telling Christopher.

"There is a taboo attached to vulval cancer, and the thought of telling my son was horrendous. He found it hard to cope with. No 19-year-old boy wants to discuss his mother's vagina. In the end, though, he came to regard it like any other cancer. He just wanted me to survive."

Her long-term partner, Darren, 32, was consistently supportive and took her to Basildon hospital, where she had the five-hour operation. Varma removed the tumour, both groin lymph nodes and lymph glands, and tissue surrounding the tumour.

Once the tumour was removed, Gittos took over. In a relatively new procedure (which he normally does just twice a year) he began reconstructing Karen's vagina. He says: "My goal was to make Karen's vagina look normal and to hide the scars of the operation. In order to fill the hole in her vagina, I cut a portion of tissue - 15cm long and 5cm wide - from the fold under her right buttock. The scar was then hidden in the crease of her buttock. The tissue - which contained a blood vessel and an artery - was lifted up on three sides, rotated 180 degrees, then turned inside into Karen's vagina, rebuilding it. It was then sutured into place. Eventually, in a matter of months, or even years, nerves will grow there again."

Karen was originally scheduled to remain in hospital for two weeks after the operation. Smiling at the memory of her own determination, she says: "I wanted to get out as soon as possible. I did my utmost to obey the four most important rules: irrigation (keeping the area clean), good hygiene, maintaining a positive mental attitude, and becoming mobile. I left the hospital after a week."

By now, she had given up her job as general manager of a restaurant. Three weeks after the operation, she began a 15-day course of one minute of radiotherapy per day. She was in a great deal of discomfort, but never wavered from her goal of returning to normal as quickly as possible.

"Everything between my legs felt as if it was in the wrong place, and completely numb," she says, adding: "Darren accepted the way in which my vagina looked. We loved each other. Sex wasn't an issue and he knew that everything would be all right in a few months."

Eight weeks after the operation, Karen summoned up the courage to have sex once more. She says: "I had gone to all this trouble to preserve my vagina, so I felt honour bound to try it out. We took things very slowly. My vagina looked like a patchwork quilt, and all of a sudden I panicked that it wouldn't hold together. So we stopped. A week later, we tried again. Although there was some numbness at the top of my right leg, the sensation in my vagina felt normal. Sex was exactly the same as before the operation, and I was thrilled. Considering that nearly a third of my vagina had been removed, the outcome was miraculous."

Although Karen has managed to sustain her sex life, the rest of her story has not ended so positively. She and Darren broke up, she says for reasons unrelated to the cancer. And although she has a new partner, Karen's life is still fraught with uncertainty. In most cases, vulval cancer does not spread to the lymph nodes. But because Karen's tumour was so advanced, the cancer has spread to two lymph nodes.

She tries hard to remain strong and positive. In a matter of fact way, she says: "The chances of me dying in the near future are very high. Because the cancer reached my lymph node, whenever I have a stomach ache, a touch of constipation, a period pain, a backache, I am petrified that this indicates the start of secondary cancer. I know that if I get it, I have no more hope. There is no treatment, no cure. So every time I get indigestion, or just a little twinge, I go straight to bed, and cry buckets."

In the 10 months since the operation, Karen has had countless scans, terrified that a secondary cancer is present. So far, she has been lucky, and, despite the fear, has remained strong. "I go through hell. But I know if I spend every day of my life terrified that every little ache and pain means a secondary cancer, I'll go insane. I'll have no quality of life left. So I fight to remain positive."

She has become a zealous campaigner, determined to make women aware of the existence of vulval cancer: "Vulval cancer is a disease that can strike any woman. We all examine our breasts as a matter of course, but we don't examine our vaginas. I believe that every woman should examine herself internally at least once a month. I didn't. And I hadn't heard of vulval cancer either. If I had thought it was a possibility I would never have delayed seeing a doctor. I would never have put my life on the line. I don't want other women to make the same mistake."